This dissertation provides insight into the quality of life (QoL) of people with dementia
(PwD) who receive long-term care at home and in long-term care facilities. In addition,
this dissertation shows which factors are associated with QoL of PwD receiving longterm
care at home and in long-term care facilities. Investigating associations with QoL is
essential as it provides information about how to improve QoL. Several studies employing
various research methods were conducted. First, a systematic literature review was
performed (Chapter 2). Second, observational data about QoL and quality of care (QoC)
of 2014 PwD from eight European countries were collected (Chapter 3 and 4). Third, a
total of 9,660 ecological momentary assessments were performed in the Netherlands to
obtain more in-depth information about QoL and everyday life of PwD (Chapter 5, 6 and
7). The present chapter summarizes all the studies described in this dissertation.
Chapter 1 contains a general introduction to this dissertation, addressing long-term
care, dementia, and QoL. Furthermore, the aims and outline of this dissertation are
specified and the data collection methods are described.
A systematic literature review (Chapter 2) identified only a few high quality studies
investigating the association with (change in) QoL of PwD living in long-term care facilities.
The results of this review suggested that depressive symptoms are associated with
a low self-reported QoL. A low proxy-reported QoL appears to be associated with behavioral
disturbances, especially agitation. As PwD rated their QoL differently than proxies
such as caregivers, the perspective of QoL measurement influenced QoL associations.
An international cross-sectional survey (Chapter 3) was conducted to obtain information
about QoL and QoC indicators. The survey was conducted in eight European
countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and
Sweden) with PwD in one of two types of living arrangements (home or long-term care
facility). Results showed that QoL of PwD is often rated highest in Sweden and England
and lowest in Estonia and Spain. No differences in QoL were detected between the
living arrangements. For the QoC indicators, no consistent patterns of certain countries
or living arrangements scoring better or worse were detected. Furthermore, associations
between QoL and QoC indicators were assessed and the presence of depressive
symptoms was most consistently associated with lower QoL.
An international longitudinal survey with a follow-up period of three months (Chapter
4) investigated the factors associated with changes in QoL of PwD recently admitted
to a long-term care facility. Again, PwD living in one of the eight participating European
countries were included. On an individual level, three groups were identified in which
PwD’s QoL: 1) decreased (quarter of the sample); 2) stayed the same (half of the sample);
and 3) increased (quarter of the sample). A decrease in self-reported QoL was
associated with better cognitive ability. A decrease in proxy-reported QoL was associat-
ed with greater dependency in activities of daily living (ADL) at baseline, more depressive
symptoms at baseline, an increased ADL dependency between baseline and followup,
and an increase in depressive symptoms between baseline and follow-up.
Chapter 5 reports on the development, reliability and feasibility of the Maastricht
Electronic Daily Life Observational-tool (MEDLO-tool). This observational instrument
assists in obtaining in-depth information about the daily lives of PwD through ecological
momentary assessments. Using the MEDLO-tool, the following domains can be assessed:
1) activities; 2) physical environment; 3) social environment; and 4) emotional
well-being. Initial results showed that the MEDLO-tool is reliable, feasible, and can effectively
provide detailed insight into the daily lives of PwD who live in long-term care
facilities.
An observational study using momentary assessments (Chapter 6) investigated relationships
between aspects of daily life and proxy-reported QoL of PwD living in longterm
care facilities for longer periods of time. People with dementia living in the Netherlands
were included in this study. Results revealed that a high QoL is associated with
frequent social interaction and a positive mood. The association between QoL and active,
expressive, and social activities remained unclear.
Mood, an important indicator of QoL, was used as the primary outcome measure of
the final observational study using momentary assessments (Chapter 7). This study
identified the degree of association between mood, activities, and social interactions
during everyday life of PwD living in long-term care facilities for longer periods of time.
Results showed that a positive mood is associated with (....)